I am so grateful to have been illustrated by @cantgoout_imsick for her #BelieveUs Series in which she draws women with chronic illnesses who have not been taken as seriously as they should by the medical community and society.
It has been a long process of me learning to accept and embrace my health conditions, but it has been an even longer process of me trying to convince doctors and consultants that I have real medical problems.
"My pain is real, you just can't see it"
Since I was about 5 years old I have always remembered my knees dislocating and my ankles swelling up where I would be left in excruciating pain when I walked for long distances. My mum would constantly bring me to the doctors and explain my symptoms, but they would always brush her off and tell her that I had ‘growing pains’ and that the dislocations and constant pain I was experiencing in my ankles would eventually go away. It was like they didn’t believe her and that she was making this all up out of nowhere.
When I was 10 years old, I experienced the biggest knee dislocation I have ever had that has left me disabled and having to use crutches to mobilise. My kneecap had twisted all the way to the other side of my leg and was out of place for around 4 hours.
When I arrived at the hospital, I had to have my jeans cut off because the ambulance crew couldn't cut them off beforehand, it took a while but eventually my knee was put back into place. They bandaged my whole leg from my thigh down to my ankle and told my mum and I that the bandages should not be removed until I received an appointment for physiotherapy but low and behold physiotherapy never came and I was forgotten about until my mum demanded for me to be seen after waiting 10 weeks.
Unfortunately, by the time I was seen by a physiotherapist my leg had fused straight and I was unable to bend it for 9 months, which led me to have my first operation and a 3 week hospital stay. This surgery initially went wrong and had to be changed while I was still under anaesthetic as my mum got a call 30 minutes into my surgery to let her know that there were complications and that the originally surgery couldn't go ahead.
They then gave my mum a few minutes to make a decision on having an alternative operation. After the change of plans, I was given an epidural and put into a Continuous Passive Motion Machine. This procedure left me bed bound for 3 weeks where 2 of those weeks I was numb from the waist down and couldn't feel a thing.
Since that day, I have been diagnosed with Osteoarthritis, Hyper-mobility, Chronic Pain Syndrome, Muscle Wasting, Valgus Deformity and Patellofemoral Pain Syndrome where my knee and leg have gone through some drastic changes over time and in the last 9 years I have had 4 different surgeries including an Arthroscopy and a Femoral Osteotomy and have now been told that I need a knee replacement, but at 18 years old, I am too young to have one.
I feel as though I have been left in this position by lack of knowledge, consultants who have constantly made me feel like it’s all in my head and the feeling of not being believed once again while on top of all of this, still trying to manage my pain and symptoms every day.
When I was 15/16 years old I was referred to a very well known Children's Hospital after having my Arthroscopy procedure where I was put into a program that had everything I needed all in one place (a consultant, physiotherapists, a rheumatologist and a pain management consultant). I was told by the consultant that ran the program that I didn't need any more surgeries as I would only be getting it for 'cosmetic' reasons and that I didn't actually need it to improve my pain and mobility. The professionals at this hospital made me feel worthless and crazy... Something a teenager should never be made to feel!! Thinking back to that time still makes me feel angry and patronised which is how many consultants have made me feel (and continue) to make me feel.
"Not being believed is what hurts the most"
I have spent the last 9 years battling with consultants to give me a proper diagnosis that could perfectly link and explain all of my symptoms. It has been a long and tiresome process for not only me, but also for my mum because she has been fighting for answers all of my life and I can’t help but wonder if all of this could have been prevented if the doctors had listened to her from the start.
Although the last 9 years have been frustrating and tiring, I truly believe this has shaped me into the person I am today. I know there is another condition out there that is connected to what is happening with me and I’ll continue to try and find answers.
Never let a doctor, consultant or ANYONE make you feel as though you’re crazy. The doctors were told about my dislocations, but didn’t take them seriously... Years later one knee dislocation changed my entire life so NEVER STOP PUSHING if you know something is not right.
This is just a fraction of what I have had to go through and I can only imagine what anyone else with a chronic illness has had to go through too. It has been exhausting for me but needless to say, you're not alone.
I'm so thankful to @cantgoout_imsick for allowing me to share a little bit about my disability, my story and a snippet into my life. There are many more stories from women with chronic illnesses that I know people will be able to relate to who have shared their stories through @cantgoout_imsick Instagram page.
I originally wanted to keep this blog short but telling my story is hard to shorten! In the future I will have more blogs where I will write about several different experiences I have encountered since becoming disabled. Keep a look out on my Instagram @capricekwai to see when I have new blogs out.
Please remember you're not alone, you're so much stronger than you think. We've got this!
"Never stop fighting for yourself, your body and your condition"
Caprice-Kwai Xx